Dealing with Dementia: The Long ‘Long Goodbye’ and All That Care

By Eileen Brown

It took nearly sixteen years for Ellen to be ready to disclose her personal story in print about the devastating and relentless journey over many years that involved caring for her loved spouse, who had early-onset dementia.

Based on the strategies, ideas, and help she utilized in providing continuous care, Ellen has provided carers with practical suggestions to consider and use, if appropriate. She talks about losses and gains, about what she learned as a consequence of her experiences, about grief and adjusting to life after the death of the dementia sufferer, and particularly about caring for your own health and well-being so that you become a better carer.

It is hoped that others in a similar position may benefit from her experience.

Caring for someone with dementia can teach you a great deal about life and living, coping and surviving this dreaded disease, and hopefully how to move on eventually when the dementia sufferer dies.

• Language: English
• Publisher: Balboa Press AU
• Release date: Oct 25, 2017
• ISBN: 9781504310079

Eileen Brown

Ellen trained as a primary teacher before spending twenty years as a lecturer in a Teachers’ College. She took an early retirement when her second husband was about to retire at the age of sixty. She cared for him for many years until his death. She has been involved with Alzheimers Australia Victoria as a volunteer for sixteen years educating medical students, talking with carers and also in public speaking. She has spoken at conferences and been involved in the making of three videos about Alzheimers. She also now volunteers as a leader of a health walk and in several roles at her church. She has a strong altruistic desire to help others by passing on the knowledge gained during her personal experience in caring for someone with dementia, as well as sharing the strategies and insights that helped her cope in her demanding caring role over many years. Ellen was sustained also by addressing her spiritual needs.

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Copyright © 2017 Eileen Brown.

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ISBN: 978-1-5043-1006-2 (sc)

978-1-5043-1007-9 (e)

Balboa Press rev. date: 09/18/2017

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TABLE OF CONTENTS

Part One

My Personal Experience Of Caring For A Spouse With Dementia

The Long Long Goodbye- (And All That Care)

Alzheimer’s Disease

Progression Of The Disease

Introduction

Chapter 1 Very Early Signs

Chapter 2 Early Stages Of Dementia

Chapter 3 Early Middle Stages Of Dementia

Chapter 4 Middle Stages Of The Disease

Chapter 5 More Paranoia Attacks

Chapter 6 Moving House

Chapter 7 Money Matters

Chapter 8 Suffering Stress

Chapter 9 Decision Time

Chapter 10 Third And Final Stage Of Alzheimer’s Disease

Chapter 11 In Care – Low Level Then High Level

Chapter 12 Aftermath Problems

What I Have Done To Assist Aav In Speaking About Dementia

Thing William Could Do And Things He Was Unable To Do

But Things I Have Gained From The Experience

Things I Have Learned From My Experience

Conclusion

Painting From The Heart

Ten Paintings.five Before And Five After William’s Death

Part Two

The Definition Of Stress(From Pritikin Lifestyle Feb 1999)

Individual Strategies For Coping With Stress

Grief

Caring For Yourself

Relaxation

This ‘Letting Go’ Business

Appendix A Not Only But Also

Appendix B The Carer Caper

Final Comments

PART ONE

MY PERSONAL EXPERIENCE OF CARING FOR A SPOUSE WITH DEMENTIA

Dementia is not the result of normal aging.

It is the result of a number of conditions arising from deterioration of the brain, the most common of which of is Alzheimer’s Disease, accounting for about 70% of all dementia cases.

The symptoms include memory loss, confusion, disorientation and lessening of intellectual functioning.

What are some of the symptoms of dementia?

# forgetting things and not remembering them later

# forgetting and jumbling words and then not making sense

# disorientation, forgetting where one lives or name of your street

# loss of judgement, wearing odd combinations of clothes

# forgetting about numbers or money

# misplacing things, hiding them or putting them in odd places

# mood swings, rapid changes for no apparent reason

# change in personality, becoming fearful, depressed, angry or apathetic

# not being able to learn new information

# repeating the same story, or asking the same questions again.

Where do you go for help and support?

Make an appointment with your GP. You may be referred to an Aged Care Assessment Team (ACAT), or a specialist, for further examination.

For help. support and referral you can call the Alzheimer’s Association National Helpline (free-call number) 1800 100 500

The person with Alzheimer’s has a lot of plaques and tangles affecting the brain and its functioning, not just memory. This disease is the result of a slow but inexorable physical damage to the brain, and, as the brain is increasingly destroyed, so also the person becomes gradually affected in his, or her, daily life. Alzheimer’s Disease slowly and progressively destroys brain cells, resulting in permanent memory loss and confusion. Characteristics include difficulty with problem solving, in remembering recent events, difficulty in performing familiar tasks and learning new ones.

THE LONG LONG GOODBYE- (AND ALL THAT CARE)

• A personal experience of the relentlessness of having to deal with a loved spouse’s journey through dementia ending finally with his death.

• Saying ‘goodbye’ over many long years while providing fulltime care.

CARE – Concise Oxford English Dictionary definition…

The provision of what is necessary for the health, welfare, maintenance and protection of someone (or something).

feeling concern for to keep safe and well to provide for

taking care of to be willing to do something, to look after, to keep safe

ALZHEIMER’S DISEASE

• 14 times more common than multiple sclerosis.

• A disease in which brain tissue deteriorates in a characteristic way.

• A condition which attacks the brain cells inhibiting the transmission of messages from one cell to another.

• There is no known cause and at the moment no medical treatment which will cure the progression of the disease but there is promising research in this area.

• Brains of sufferers have been found to have low levels of an enzyme which produces the chemical acetyl choline, one of the chemicals which is used by the brain to transmit messages between nerve cells.

A deficiency in this enzyme may be the key cause of memory loss?

• Alzheimer’s disease was first noticed in 1907 by Dr Alzheimer, a German neurologist

No two cases of dementia are exactly the same because it depends on which parts of the brain are affected.

In rare cases there may be a genetic predisposition.

PROGRESSION OF THE DISEASE

Stages of the Disease

Early Stage

• There may be slight changes in personality.

• Losing things such as keys.

• Forgetting appointments.

• Impaired judgement.

• Difficulty finding words.

• Short term memory loss.

• The forgetfulness stage.

• Apathetic. Not open to new experiences.

• Feeling safe in the known home environment not in new places.

Duration 2-4 years

Memory loss, lack of spontaneity, subtle personality changes, disoriented.

Middle Stage

• Memory gets worse. Unable to find the toilet, do familiar chores.

• Disoriented to time and place – sometimes disoriented to persons.

• Difficulty dressing and with other daily tasks.

• May be agitated in new social situations.

Duration Several years

Impaired cognition and abstract thinking, restlessness and agitation, wandering (sundowner syndrome), inability to carry out simple tasks. Impaired judgement, inappropriate social behaviour, repetitive behaviour.

Late Stage

• Incontinent.

• May not recognise self or other